Hi. My name is Amanda and I am married to my best
friend Neil. We have 2 wonderful little boys. Carter is 4 and Jackson is 17 months
old. After having 90% of his small
intestine removed on day 1, Jackson is left with a condition called Short Bowel
Syndrome… AKA Short Gut. There is no
cure, no fix. We don’t know exactly what
the future holds for our little boy but we do know that he a fighter. He is my hero.
friend Neil. We have 2 wonderful little boys. Carter is 4 and Jackson is 17 months
old. After having 90% of his small
intestine removed on day 1, Jackson is left with a condition called Short Bowel
Syndrome… AKA Short Gut. There is no
cure, no fix. We don’t know exactly what
the future holds for our little boy but we do know that he a fighter. He is my hero.
***************
Miggy:
Can you take me back to the day you knew your son Jackson would have
special needs? Do you remember how you felt? Can you compare those first thoughts
and feelings with how you feel now?
Can you take me back to the day you knew your son Jackson would have
special needs? Do you remember how you felt? Can you compare those first thoughts
and feelings with how you feel now?
Amanda:
That day was devastating for me as I learned of exactly what this
condition meant, everything he would lose because of it. I had never heard of this condition and to
this day I am still learning about it. I felt so alone and overwhelmed. One of my first thoughts (I’m kind of embarrassed
to say) was “Will I be able to bond with a child with special needs?” And my second thought was “Can I ever truly
be happy again?” The answer to both
these questions is YES YES YES!! Our
lives are completely different than they were 17 months ago but we are learning
to embrace our new normal and we are still happy! And I am so in love with my son!
That day was devastating for me as I learned of exactly what this
condition meant, everything he would lose because of it. I had never heard of this condition and to
this day I am still learning about it. I felt so alone and overwhelmed. One of my first thoughts (I’m kind of embarrassed
to say) was “Will I be able to bond with a child with special needs?” And my second thought was “Can I ever truly
be happy again?” The answer to both
these questions is YES YES YES!! Our
lives are completely different than they were 17 months ago but we are learning
to embrace our new normal and we are still happy! And I am so in love with my son!
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Miggy:
Explain how Jackson’s specific special need affects your day-to-day
life?
Explain how Jackson’s specific special need affects your day-to-day
life?
Amanda:
One of the main side effects of short gut is diarrhea. With so little intestine
remaining he has and most likely will, have diarrhea for the rest of his
life. We are talking sometimes 15-20
times a day. And this isn’t your normal
baby “blowout.” More often than not, it
cannot even begin to be contained in a diaper.
This produces about 5-6 loads of laundry a day. Not to mention the beating that my poor
carpet takes each day. I have some
fantastic carpet cleaner if you need some tips! 🙂 Luckily we have made
great strides and he is down to 5-6 dirty diapers a day. Poop really controls his life. He is often awaken several times in the night
because of dirty diapers and naps are cut short by it as well.
One of the main side effects of short gut is diarrhea. With so little intestine
remaining he has and most likely will, have diarrhea for the rest of his
life. We are talking sometimes 15-20
times a day. And this isn’t your normal
baby “blowout.” More often than not, it
cannot even begin to be contained in a diaper.
This produces about 5-6 loads of laundry a day. Not to mention the beating that my poor
carpet takes each day. I have some
fantastic carpet cleaner if you need some tips! 🙂 Luckily we have made
great strides and he is down to 5-6 dirty diapers a day. Poop really controls his life. He is often awaken several times in the night
because of dirty diapers and naps are cut short by it as well.
This makes it really hard to go many places or want to go
many places. Just last week at church he
had a particularly bad blowout and I tried to sneak out of Primary without
anyone noticing until the diaper began to overflow on to the floor and my
diaper bag. It was very embarrassing and
I ended up leaving church early in tears.
He will be able to be potty trained someday and hopefully these episodes
can be contained to a toilet but until then, it truly controls most of our
lives. Diarrhea is not only a bit gross
but can cause many medical problems for him such as dehydration, and very
quickly. He has been rushed to the
hospital before for severe dehydration and spent many nights in the hospital
because of it.
many places. Just last week at church he
had a particularly bad blowout and I tried to sneak out of Primary without
anyone noticing until the diaper began to overflow on to the floor and my
diaper bag. It was very embarrassing and
I ended up leaving church early in tears.
He will be able to be potty trained someday and hopefully these episodes
can be contained to a toilet but until then, it truly controls most of our
lives. Diarrhea is not only a bit gross
but can cause many medical problems for him such as dehydration, and very
quickly. He has been rushed to the
hospital before for severe dehydration and spent many nights in the hospital
because of it.
Aside from the diarrhea issues my son has a central
line. A line they inserted in his neck
and runs to his heart. He receives TPN 4
nights a week because his body is unable to absorb enough of the nutrients and
calories by eating. TPN goes right into
the veins and bypasses the intestines so it can be absorbed. The TPN and central line save his life
because without it he would slowly starve to death. A central line requires a lot of care. It must be kept dry and clean at all times (which
is really hard with constant diarrhea).
Having a line makes him susceptible to horrible infections. Infections that can and almost have taken his
life. These infections can come from
outside bacteria entering the line or from his gut leaking bacteria. Jackson spent the first 6 months of his life
in and out of the hospital (mostly in) fighting these infections. There were multiple times I thought we might
lose him. Currently we are 1 year
infection free! And praying it stays
that way. Any time he has a fever he has
to be taken directly to the Emergency Room for blood work and observation since
a fever is the first sign on infection and it can go from bad to REAL bad in
minutes with these infections. TPN
requires a ton of supplies so going anywhere requires bags and bags of
supplies. At least I’m not the heaviest
packer anymore!
line. A line they inserted in his neck
and runs to his heart. He receives TPN 4
nights a week because his body is unable to absorb enough of the nutrients and
calories by eating. TPN goes right into
the veins and bypasses the intestines so it can be absorbed. The TPN and central line save his life
because without it he would slowly starve to death. A central line requires a lot of care. It must be kept dry and clean at all times (which
is really hard with constant diarrhea).
Having a line makes him susceptible to horrible infections. Infections that can and almost have taken his
life. These infections can come from
outside bacteria entering the line or from his gut leaking bacteria. Jackson spent the first 6 months of his life
in and out of the hospital (mostly in) fighting these infections. There were multiple times I thought we might
lose him. Currently we are 1 year
infection free! And praying it stays
that way. Any time he has a fever he has
to be taken directly to the Emergency Room for blood work and observation since
a fever is the first sign on infection and it can go from bad to REAL bad in
minutes with these infections. TPN
requires a ton of supplies so going anywhere requires bags and bags of
supplies. At least I’m not the heaviest
packer anymore!
Another daily struggle we have is with weight gain. It is a struggle to get him to gain weight
and keep that weight. Jackson still has
to drink formula as he is also allergic to milk, eggs, wheat, oats, fish,
peanuts and tree nuts. Aside from the
allergies his body cannot digest/handle all fruits, most veggies, foods high in
fats, or too many carbs. He can have no
sugar. He mostly eats meats of all kinds
sprinkled with a little rice, potatoes, green beans and squash. It is very stressful making sure he is
getting enough calories without getting too much food to overwhelm his
gut. Jackson currently drinks about 45
ounces a day of formula along with table food and he still cannot gain weight
without the help of TPN. We hope that
someday his gut will be able to adapt enough to absorb the calories and
nutrients he needs without TPN. Jackson
started his life on 100% TPN 24 hours a day, 7 days a week. Now he is down to 36 hours a week. He is making progress. Slowly but surely. If he ever can survive without a central line
he will need to consume an insane amount of calories. He already eats 3 times as many calories as a
normal 1 year old. We even have to wake
him twice during his 12 hour nights to make sure he’s getting enough
calories. I’ve had several people
comment that they wish “they could eat whatever they’d like and not ever gain
weight.” But I promise you, you don’t
really mean that. It is frightening to
worry and wonder if your baby is slowing starving and knowing that no matter
how much you feed him, it may never be enough.
Our hope is that he will someday be TPN free and able to eat a fairly
normal diet and have fairly normal bathroom habits.
and keep that weight. Jackson still has
to drink formula as he is also allergic to milk, eggs, wheat, oats, fish,
peanuts and tree nuts. Aside from the
allergies his body cannot digest/handle all fruits, most veggies, foods high in
fats, or too many carbs. He can have no
sugar. He mostly eats meats of all kinds
sprinkled with a little rice, potatoes, green beans and squash. It is very stressful making sure he is
getting enough calories without getting too much food to overwhelm his
gut. Jackson currently drinks about 45
ounces a day of formula along with table food and he still cannot gain weight
without the help of TPN. We hope that
someday his gut will be able to adapt enough to absorb the calories and
nutrients he needs without TPN. Jackson
started his life on 100% TPN 24 hours a day, 7 days a week. Now he is down to 36 hours a week. He is making progress. Slowly but surely. If he ever can survive without a central line
he will need to consume an insane amount of calories. He already eats 3 times as many calories as a
normal 1 year old. We even have to wake
him twice during his 12 hour nights to make sure he’s getting enough
calories. I’ve had several people
comment that they wish “they could eat whatever they’d like and not ever gain
weight.” But I promise you, you don’t
really mean that. It is frightening to
worry and wonder if your baby is slowing starving and knowing that no matter
how much you feed him, it may never be enough.
Our hope is that he will someday be TPN free and able to eat a fairly
normal diet and have fairly normal bathroom habits.
Miggy: What are the
biggest worries you face for Jackson?
biggest worries you face for Jackson?
Amanda: I worry about
Jackson in social situations. Food is
such a social thing and he may never be able to eat birthday cake or pizza like
the other kids. I worry about him being
excluded from birthday parties, Halloween, Easter, or Christmas activities
since they are largely based around food.
Jackson in social situations. Food is
such a social thing and he may never be able to eat birthday cake or pizza like
the other kids. I worry about him being
excluded from birthday parties, Halloween, Easter, or Christmas activities
since they are largely based around food.
Miggy: Now for a
lighter question, have you ever had any funny conversations/moments you never
imagined due to your special needs situations?
lighter question, have you ever had any funny conversations/moments you never
imagined due to your special needs situations?
Amanda: Oh wow! Where to start! The loud farts in quiet church….down to my 4
year old asking at each diaper change:
“Was it a shart or a blowout Mom?!?”
It’s always one of the two!
year old asking at each diaper change:
“Was it a shart or a blowout Mom?!?”
It’s always one of the two!
Miggy: How can people
best approach or respond to Jackson? Is there something you wish other people
knew so as to avoid awkward or hurtful situations?
best approach or respond to Jackson? Is there something you wish other people
knew so as to avoid awkward or hurtful situations?
Amanda: I wish people
knew it was ok to ask me about him and his condition. When you come over and he is connected to his
tubes/pumps of TPN it’s ok to ask what those are instead of pretending they
aren’t there. You won’t offend me. J And bless the sweet lady who helped me clean
up his mess last week at church without saying anything. He is a regular little boy who loves books
and trucks and cries when he doesn’t get his way!
knew it was ok to ask me about him and his condition. When you come over and he is connected to his
tubes/pumps of TPN it’s ok to ask what those are instead of pretending they
aren’t there. You won’t offend me. J And bless the sweet lady who helped me clean
up his mess last week at church without saying anything. He is a regular little boy who loves books
and trucks and cries when he doesn’t get his way!
Miggy: What is the
biggest lesson you’ve learned since becoming Jackson’s mom?
biggest lesson you’ve learned since becoming Jackson’s mom?
Amanda: That I can’t fix everything and that’s ok. A good attitude goes a long way. I decided on day 1 that I could either be
bitter about the situation or I could look for all the positives in our lives
and all the miracles. If I were bitter I
would have missed all the miracles we have been blessed with.
bitter about the situation or I could look for all the positives in our lives
and all the miracles. If I were bitter I
would have missed all the miracles we have been blessed with.
Miggy: If you could
say something to the mom who is just starting on this journey, what would you
say? What would you
say to yourself if you could go back in time?
say something to the mom who is just starting on this journey, what would you
say? What would you
say to yourself if you could go back in time?
Amanda: I would tell
her that you can still be happy. Happier
than ever, but at the same time it is okay to cry. If I could go back in time I would tell
myself that I am stronger than I give myself credit for and that tears aren’t a
sign of weakness.
her that you can still be happy. Happier
than ever, but at the same time it is okay to cry. If I could go back in time I would tell
myself that I am stronger than I give myself credit for and that tears aren’t a
sign of weakness.
***************
A huge thank you to Amanda for this incredible spotlight. This spotlight was so educational as I had never heard of short gut and had NO idea how serious and life altering this could be. Just one of the many reasons I continue to be grateful for this series…I really learn so much each time. And I love what you said at the end, that you can be “happier than ever, but it’s still OK to cry….tears aren’t a sign of weakness.” Amen sister! You’re amazing Amanda… and that Jackson is a dreamboat! 🙂 Love him.
As always if you or anyone you know would like to participate in my special needs spotlight series please email me at thislittlemiggy at gmail dot com. And if you’ve emailed me and haven’t heard back (or it’s been a while since I last responded) please be patient! I’m getting there!
Have a great weekend!
I love these spotlights you do! I was hoping you would get to the part about why he had to have 90% of his intestines removed?
Sorry i forgot to mention that part. The main artery that should have supplied blood flow to the intestines was weak. The surgeon said his small bowel looked like a big chain of sausage links. Since there was little to no blood supply to the bowel they were basically dead and had to be removed.
Wow. Very inspiring story. I have never heard of that condition before too. It sounds hard, but seeing Ms. Amanda's positive attitude now, I can see everything will be alright. Just by looking at Jackson, you can already tell that he's a wonder child. You're right Amanda, we can't fix everything. But we can accept them, right? I salute you!
My nephew has Eosinophilic Enteritis with less than 10 foods he's allowed to eat at this point in time (hopefully more as they discover what his body can take) so he also does not have the typical social experiences associated with food. It feels good to know that there are others who understand and other little boys who learn to celebrate birthdays differently, but happily 🙂 I admire your daily hard work and positive attitude- thanks for uplifting me and teaching us about short bowel syndrome.
What an adorable little boy he is! And his big brother is a cutie, too. My brother recently had a feeding tube inserted and can't take anything by mouth, possibly never. We never realized how much life can revolve around food until now. I'll sure be praying for sweet Jackson's steady progress!
What a sweetheart! And what a blessing. I had heard of short gut, but never really understood all that the day-to-day life entailed. You and your family are amazing. Thanks for sharing.
I really do love and appreciate this series. Last week I was at a coffee shop and a little girl came in and sat down next to my son. I invited the mom to sit by me as there wasn't much space. Her daughter had devices hooked up to the back of her head and was using hearing devices as well. Because of this series, I knew it would be okay to ask this mother about her daughter, what her circumstances were. It was an amazing experience and I could tell the mother was grateful for the chance to talk about her beautiful daughter and explain what their lives were like. I would never have had the courage to have asked before and my son might have missed out on an opportunity to play with this sweet girl. Thank you, thank you, thank you!
Jackson is adorable. It is so nice to read about another mom with a situation similar to mine. My 16-month-old daughter (our fifth child) lost most of her terminal ilium on the day she was born due to a duplication cyst on her small intestine. After three months on TPN in the NICU, and four surgeries later, she was able to come home. We have never been on the charts for weight (sigh), and see a GI specialist regularly, but we are grateful for the progress she has made. She is active, happy, and smart, and I have to remind myself that amidst all the diarrhea and food struggles, we are in a good place. Were you at Primary's? Maybe we overlapped. 🙂 Best wishes to you and your cute family!